"People like Sun Shiran, who were diagnosed young and are receiving preventive treatment, are lucky among all the sufferers in China," she said, adding that the care is still not adequate, but better than most receive.

Given the relatively small prevalence of the disease in the population, and China's vast territory, it's hard to detect the patients in China, she explained.

Poor public awareness and the limited hemophilia care capacity of medical facilities are also to blame, she said.

Today, even in the capital city of Beijing, only a handful of hospitals are capable of diagnosing the disease, said Kong Delin, a hemophilia patient in Shanghai and deputy director of the Hemophilia Home of China, a volunteer civil society of more than 3,000 patients.

Many patients have to travel long distances to cities like Beijing and Tianjin for medical help, he said.

At Wu's hospital, for example, more than 70 percent of the hemophilia patients came from other parts of the country, she said.

To address these problems, the Ministry of Health launched earlier this year a nationwide hemophilia disease management system to help take better care of the patients. Under the system, hospital-based hemophilia management centers would be set up in three to five years across the country to register and monitor patients and standardize disease diagnosis and treatment.

To date, more than 7,000, including Sun, have signed up.